Thursday, 30 August 2012

Tuesday 14th August- MOAS II Operation Day.

 I have been calling the operation the MOAS II but it’s probably not quite true technically speaking. Whilst just as invasive and with fundamentally the same proceedure’s (Midline laparotomy to redo complete cytoreduction for Pseudomyxoma) obviously there are certain elements of the operation that were done first time around that can’t be re-done the second time around such as the spleenectomy, removal of the gall bladder and so on.   The notes call this operation a de-bulking procedure.

 The day started early for me. I was awoken just before 06:00hrs to get ready for the op. I was handed a gown and went into the bathroom for a quick cool shower (not too hot or this can cause problems with bleeding during the op). I freshened myself up and then sat patiently in my room awaiting the staff. Tracey and Mum arrived to see me off. We sat quietly and chatted. I also donned the flight socks that I had been given to help stop deep vein thrombosis (DVT). I passed my jewellery over to Tracey; taking off the wedding ring is always a difficult moment. We tidied my stuff away and packed my case ready to go into secure storage until I needed it.

 At around 07:30 the medical staff arrived in their scrubs ready to take me down the theatre. Another change this time around is that there was no pre-med and that I was to walk down to theatre. As I left my room I waved a goodbye to Robin. I had met him on the ward, he was scheduled to have the full MOAS at the same time as I was having my operation and he too was all prepped ready to go. We wished each other luck and bid our farewells. Tracey and Mum joined me so far but Tracey had already decided that she didn’t want to see me go off to sleep as it was just too hard for her. So we had agreed that we would say our goodbye’s part way down to theatre. She and mum put on a brave face as we all hugged and kissed and said goodbye. It was really hard, I struggled to hold back the tears and Tracey was upset. We didn’t hang it out and soon parted company. I walked the final short walk to the theatre with the nurse. We turned into the pre op rooms and once through the door I was in familiar surroundings again. A smallish room with wall cabinets on either side, works tops below with cupboards underneath and double doors at the end leading directly into the theatre. These doors were open again initially but were soon closed as my gaze fixed on goings on in that room. There were three or four staff in the room and a gurney in the middle. It was quite narrow and was high off the ground. On top was an inflatable cover. I was told to remove my gown and to hop on the gurney the inflatable cover was placed over me and I found that this was full of warm air and I would not get cold. I led down and handed the staff my glasses. As before they worked very quickly and all seemed to be scurrying around and busying themselves. The anaesthetist talked to me throughout and then finally announced that an injection was coming that would send me off to sleep. I had no cannula in so he tapped my left wrist and found a vein then came the “sharp scratch” announcement and that was the last that I can remember.....

Tracey and mum headed back to the flat and composed themselves and began the long waiting game. They received a call at around 13:00hrs to say that the operation had gone well and that they had removed two tumours and an area from my stomach. They were at this point about to give me the HIPEC (Heated Intra Peritoneal Chemotherapy) bath. This is where the abdominal cavity is soaked and washed in a chemotherapy solution. Area’s that were affected by the PMP were given a particular scrubbing and extra attention. Mum and Tracey were told that they could come and see me at 17:00hrs in ICU once I was settled.
 Tracey and Mum arrived in ICU at 17:00hrs on the dot! On the way in the bumped into Vasili the male nurse who had looked after me so well last time around. He greeted them and let them in. I had managed to come through the operation and did not have any chest drains in or a ileostomy (stoma). I was however intubated (breathing tube) and had a centralline just below the collar bone used for feeding and administering drugs, five stomach drains in the left hand side of my stomach and a drain on my right side for administering the post op Chemo (I think!). I was also catheterized and had a nasal gastric tube in. I was still fast asleep at this point but Mum and Tracey were told if they came back at 18:30hrs then they would start to wake me up.
 Tracey was given a chair and sat down beside me for a while. Suddenly the head end of the bed started to raise with me on it fast asleep. The nurse came running over “what’s happening?” she said as the bed continued to rise with me now sat almost upright! Tracey thought the nurse had been doing it when in fact her knee was pressing on the button!
Tracey and Mum returned again at 18:30. Apparently the nurse was having trouble waking me up. Whatever they tried I just didn’t seem to respond, even Vasili had tried.
“I’ll wake him up” Tracey proclaimed, plonked herself next to me and squawked “Dave” quite loudly. That did the trick! Apparently my eyes opened wide immediately at the sound of her voice and I was awake. Tracey then spoke to me reassuring me that all had gone well, all the cancer had been removed and that I had not got a stoma. I responded with hand gestures such as thumbs up and the OK sign used by divers as I was unable to speak because of the breathing tube.

The only memory that I have of ICU is one where I made the nurse who was looking after me laugh. I was aware that she was close by me and said something about head and yours truly started miming the actions to the head, shoulders, knee’s and toe’s children’s song! The nurse picked up on this and was laughing at me! I then drifted back off into my chemically induced sleep.....

Monday, 27 August 2012

Monday August 13th MOAS II -1 Day.

 It was a fitful night’s sleep last night. I watched a DVD and wrote up my blog entry, showered and got ready for bed. I finally turned out the light and was just dosing off when in came a male nurse with my first Heparin jab, stabbed me in the leg and bid me good night! So fully awake again I then turned back over and tried to doze off.
 The second half of the night was better and I slept more. It was an early start though. I awoke just before 7am and shortly after the nurse arrived to do my observations. Not long after the anaesthetist arrived and ran through a list of questions. The doctors and consultants then seemed to be inspired by the recent London Olympic relay teams and just as one left the other seemed to arrive, sometimes in pairs, sometimes on their own.

Then came a trip down to the X-ray department for a chest X-ray. I wandered down with the chap from the room next door-Rob who is having his first MOAS at the same time that my operation is being done. This is quite often the practice at Basingstoke to have two being done at the same time in adjacent theatres. I guess it allows the easy transfer of skills with such a large team.

 We returned back to our rooms to be given our second dose of Picolax. This didn’t take long to work and within twenty minutes had the desired effect. I haven’t now eaten any solid food since Sunday lunchtime. Meals have consisted of clear soup and jelly. I think the consistency of the jelly fools the body into thinking that you have had food as I haven’t felt particularly hungry, that said its now 21:45 and I wouldn’t say no to a large Big Mac meal!
 Next came the second Heparin jab, shortly followed by an ECG. The fact that I had shaved my upper body really helped as the sticky pads stuck well and it didn’t hurt too much when they were peeled off. The steady stream of visitors was frequent along with the trips to the toilet. Bloods were taken, my chest listened to on three occasions and my abdomen examined (which prompted another dash to the toilet!). I also met Pat the stoma nurse again. Whilst it’s less likely that I’ll have a stoma this time around I’m still marked up for one just in case. Pat examined me and chose the best spot for the stoma and marked me on both sides of my tummy just in case.

I also met the Pseudo physiotherapist; Jade. She is a new addition to the C2 team as at my last stay whilst there were physio’s they were not dedicated to the Pseudo ward. In addition a dedicated physio room/gym has been created on the ward and is in the process of being equipped. There are stairs to climb, weighted balls, resistance bands and an exercise bike plus various other bits of equipment. They also plan to make use of a Nintendo Wii and X-box at some time in the near future. All of which will help patients with their recovery and give them some ideas as to what they can do when they get home.

 This afternoon I managed to escape the ward for a while and went down to the flat where mum and Tracey are staying. We spent an hour or so there, the change of scenery was good and we took the opportunity to call the girls. It was great to hear their voices and to talk to them. What I would give for a hug right now....
I returned to yet another cup of Picolax waiting for me and the promise of another mad dash to the toilet. I think that maybe I should try out for the men’s relay team for the next Olympics with how quickly I’m having to move!

A final visit from yet another doctor and I was all done. I spent the evening with Tracey and Mum and we sat and chatted. All of us were tired and we face a big, long and stressful day tomorrow. It’s going to be far worse for them than it is for me. I’ll be out of it whilst they wait for the phone to ring with an update as to how things are progressing. So we agreed to bid each other good night at around 8pm. I wanted to shower and shave before bed and they needed to relax as best they could.

It will be an early start in the morning. I’ll be awoken at six am and will have a shower and get changed into my hospital gown. I’ll also have to wear flight socks to help prevent blood clots forming in the legs. Pre op medication is now not administered. Last time I did have this and was pretty sleepy when the porters came to collect me and wheel me down to theatre. This time I can walk down. Tracey has opted to say our goodbye’s at my room rather than accompany me down to theatre. I think that she would just find this too hard and it would upset her too much. I’m more than happy with this; I can say our goodbyes and then focus on the job in hand. This will be the last time I will see Tracey and Mum until Wednesday morning. Obviously throughout the operation on Tuesday I will be asleep and whilst I may return to ICU mid afternoon they will continue to keep me sedated until Wednesday morning. When I first come around I will be intubated however if my last op was anything to go by this is fairly quickly removed.
 At the moment I still feel pretty good, as relaxed as you could expect and not too anxious. I just need to get the next day out of the way and wake up in ICU with my family around me. And I need to hear the words that the surgical team have managed to get all of the PMP out of me once again.......

 It’s now 22:30hrs. I’ve just been stabbed in the leg again! I have also requested some chemical help for sleep tonight to make sure that I get a good night in. I won’t now be able to write up this next section of the blog until I am well enough. Tracey will write a diary from here on in and I’ll type it up at a later stage.

Good night, see you on the dark side of the moon!

Saturday, 25 August 2012

Admission Day

So I guess the first thing is to say is that I have had the op and that I arrived home today safe and sound. So over the next week or so I will gradually translate the diary that we have written whilst in hospital at Basingstoke and North Hampshire hospital into blog posts and bring you all up to date. So plenty of posts coming your way!
So take a step back a couple of weeks to admission day.......

Sunday, August 12th
Admission to Basingstoke MOAS II -2 Days...
 After a poor night’s sleep we awoke to the sound of thunder rumbling away in the distance. The storm crept slowly closer on a slow summer breeze the air was thick and clammy. We all gradually emerged from our beds and made our way to the kitchen for breakfast or to the bathroom to freshen up. Suddenly there was a blinding flash of lightning and almost immediately an explosion of thunder so close that you could almost feel the sonic blast of the air particles being super heated to thousands of degrees in a fraction of a second. The girls and Joyce all squealed in fright. That was as close as they get without getting struck. Car and house alarms wailed. The gods were angry today!
 After a short burst of torrential rain the storm eased it way past, thunder rolling around the skies in the distance slowly growing quieter as it crept away. And then if by magic the clouds parted and we were again bathed in warm morning summer sunshine. It was as if Mother Nature was showing us that after every big scary storm the sun does eventually shine again....

We packed our final belongings and before we knew it Mum and Dad were here ready to take us to Basingstoke. Now for the bit I hated the most; saying goodbye to the girls. Today they seemed to be dealing with things well and I think the tears we had at bedtime the night before helped to get things off our chests and to make us all that little bit stronger. The girls were great; we all held each other tight in a family hug for a while and said our goodbyes. Tracey and I fought back the tears. We then said goodbye to Joyce before heading out to the car. We pulled away and waved; both Tracey and I crumbled at this point and cried quietly in the back of the car.

 The journey to Basingstoke (now a well trodden path) was uneventful and even the weather behaved itself reasonably well. We arrived at the Hospital and went first to the reception desk to pick up the keys to both Tracey and Mum’s room. We took in their bags and got them settled before heading up to C2 ward to check in.

 I was shown to my room for the next day or so prior to the op; room 5 a large airy room with a shared bathroom. I dropped off my bags and as with my last stay was advised that they didn’t need to see me until after two and that I was free to have a wander. Great, an opportunity to head to the canteen and get some lunch. We had roast pork, the last meal of the condemned man! And a top tip for anyone else staying at the hospital. Put the key to your flat on the tray in the canteen and they’ll charge you staff rates and not the full whack.

 We headed back to the ward as agreed and soon met up with Brendan Moran who arrived to get the consent forms filled in. We talked about the operation and contrary to my understanding he advised that there were actually two small areas of PMP found on the CT scan. I asked if he felt that this was a reoccurrence or areas that were missed first time around. He felt that they were a reoccurrence. He also explained that they were in quite a tricky area to get to and that the op was not an easy one. They have to unpick the adhesions and scar tissue from the last operation. He suggested that I may get away without having to have a stoma this time around and that chest drains were also unlikely. He also added that I would probably only be given the HIPEC during the surgery and that this would not be repeated in the days following the op.
 So I signed to consent forms. I have little option do I?
 He bid us farewell and left us in the room. My mood had changed and Tracey picked up on this. I guess reality had hit home. Despite the MOAS the first time around and the HIPEC given in the four days after the op the PMP had returned. Will this happen again after this op? Also there were two areas of reoccurrence and not one. That was a bit of a shock. Plus it was in a difficult area to access. It appears that this operation may not be as straight forward as I first hoped. I now worry about what the future might hold. There are only so many times you can repeat these operations before you run out of bits of anatomy that can be removed.
Deep breath, raise the head and stick out the chest. I have to crack on, I have little option do I?
 We again went wandering this afternoon with the promise to be back on the ward at six and not to eat anything. Kerry, the nurse looking after me met us back at the room and we went through various forms, attached my i.d. wristband and gave me my first cup of Picolax (the drink used to help clear out the bowel)
“Oooh my favourite” I joked. It tasted of pure lemon juice.
My first set of observations were taken and a water sample.
Tracey and Mum were tired so we agreed that they return to their rooms to get settled and ready for bed. I showered and then sat typing up this first blog entry at Basingstoke. I’m trying to hunt down a WIFI connection so I can post it prior to the op. If not then I guess you’ll have to catch up when I get home!
 It’s now 9pm and I’m done. Until tomorrow my friends, it promises to be a busy day......

Saturday, 11 August 2012

MOAS II -4 Days

Today we have spent the day at home making final preparations for our stay at Basingstoke. We have finalised the packing and prepared the house. Joyce arrived this afternoon and we got her settled ready for her stay with the girls.
 Various people have been popping in and out throughout the day and calling us on the phone with wishes of good luck.

 I also got myself  ready by getting a hair cut and some grooming! I'm quite hairy so also tackled the chest hair as last time around the nurses had a nightmare when it came to ECG's as the sticky pads kept falling off! My meds are also packed. Unlike many people who stop taking the antibiotics after a year or so of loosing their spleen I have continued to take them and apparently this is a good thing considering what I face in the next few days.

 We sat in the garden with the girls and had takeaway for tea and chatted away happily. Then tonight at the girls bed time reality hit home and there were a few tears from us all. We sat and hugged and reassured them that all will be OK and that we will be phoning them constantly and as soon as I'm able to receive visitors they can come visit. It is so hard, we will miss them dearly and I'm dreading saying goodbye again in the morning.

 So this is my last post from home. If I can get an internet connection at Basingstoke then I'll post tomorrow and Monday. If not then I'll record a diary in the same way I did last time and update the posts retrospectively when I get home. So there may now be a break for a while until I get home again.........wish me luck......

Friday, 10 August 2012

MOAS II -5 Days.....

This last week at home with the family has been great we have been blessed with some beautiful weather that has allowed us to enjoy our time together. We have done family days out to Tyntesfield (National Trust) and also to Monkey World in Dorset. We packed pic-nics on both days and enjoyed ice cream! Fantastic days and quality time together.

 For me things are different this time around. For some reason I don't feel as worried as last time around. I'm level headed about it, I know it's a big op but I'm definitely more relaxed. Perhaps its because I know what's looming and that I'm in good hands. At this point last time around I was having trouble sleeping and the doctor gave me some pills to help. This time around I have had no such problem and have slept like a baby so far........

 Don't get me wrong I know I cant get lulled into a false sense of security and do have some fears; I worry that they may find more than just what can be seen on the CT scan and not be able to get it all out, I worry that I may get complications or infections and I worry about the hallucinations cause by the drugs. But I'm not as anxious as last time around......It's odd as perhaps I should be?

 I have received loads of support so far and have had cards and chocolates given to me and many messages from Facebook and here on the blog. I also have taken calls from Paul in Malta and Margaret from Dublin who I shared my stay with last time around. It was great to hear from them both.

 So are bags are pretty much packed, only the things we are using still to go in. Joyce is arriving tomorrow to stay with the girls again and we plan to leave home for Basingstoke Sunday morning to be there to check into the ward at midday.

I cant believe it only five days to go, time flies so quickly......

Sunday, 5 August 2012

Preparing for Basingstoke MOAS II -7 days

Friday saw my last day at work for a while.The doctor has signed me off for three months initially to recover from my op. With a bit of luck I might get back sooner but we'll see.
 The last few days at work were pretty frantic trying to get as much done as possible. My colleagues gave me a great send off again and were very kind and gave me cards and gifts. We went to the pub at lunch time and had a few drinks and a bite to eat. I'm very lucky to have such good friends.
 Saying goodbye was not so difficult this time around. I guess I'm getting hardened to it and also second time around I know what to expect and that with time I will make it back and will get back to normal again.

 With the British weather being so bad this weekend I have taken the opportunity to make a start on my packing for my stay at Basingstoke. For any patients who are going for treatment at Basingstoke for the first time I have tried to make a short list of things below that I'm taking to make my stay that bit easier. Many items are common sense stuff but there may be a few things you may not of thought of-

 Toiletries- The usual things so I wont list them all but what I will say is that I didn't use these at all last time around in ICU. The nurses took care of most things (including bed baths!) as I was too weak initially and the logistics of getting out of bed with various attachments made things difficult. However once back on C2 you have to fend for yourself so this is where you need them. By this time you are generally more mobile and feeling better and wanting to freshen up properly. I did find the bathrooms difficult as there were no shelves and ended up balancing things on the edge of the sink,bins and anything else I could use! The toiletry bags with the hooks on that you can open and hang up are useful.
Dressing Gown & slippers- Again these are great for life back on C2 once you are more mobile.
Nightwear-  Initially you have to wear a hospital gown for easy access for the medical team but once the various drains start to come out then you can start to wear your own again. As its summertime and the ward is likely to be warmer I have gone for shorts and T-shirts this time around.
Cordless Electric shaver- This is one that I did learn from last time around (and mentioned in my last post). I usually wet shave and to be honest it was just too difficult whilst in hospital. Initially I had quite a bit of growth to shave off and ended up giving up after about 20 mins as I was too weak to sit on a chair in front of the sink and ended up going back to bed. Shaving around a central line is also tricky. An electric shaver means you need less kit and could simply sit in bed or on the bedside chair and do it if you wanted.
Mobile phone- There is no issue with using these on C2 but they cant be used in ICU.
Laptop/DVD player- At my last stay there was no WIFI available for patients to use on C2. I also struggled with a dongle as the mobile reception was not good on the ward (but was ok in the family accommodation). I think there may be WIFI at the Arc centre restaurant. I did however get a lot of use out of my portable DVD player. Again as I recovered I got more and more use out of this. I found books difficult to concentrate on for too long and this worked much better.
 MP3 Player- Again I got loads of use from this led in bed listening to nice relaxing tunes.
 Books and magazines- But take something that you can easily pick up for 10 mins and then put down again. As I said above I found them difficult to concentrate on even at the later stages of my stay.
Nibbles- I munched on Jaffa cakes which I found light and refreshing once I was able to eat back on C2 and loved Cadburys Giant Buttons!
Squash- A bottle of juice or squash also makes the jugs of water more exciting.

 Just a few things that are mostly common sense but others that may be not be so obvious if your a first timer...

 So this week we continue to prepare for our stay at Basingstoke and will hopefully get a couple of days out with the girls if the weather is kind. The clock is ticking now and time running out. I need to pack in as much as possible in these next few days......